2014 was full of new partnerships, research initiatives and PatientsLikeMe milestones (we just celebrated our 10th anniversary last week!), and in 2015 we’ll continue to put the patient first in everything we do.
Everything we do starts with the community that shares their health data and experiences, which enables innovation and change in healthcare, for good. Here’s just some of what everyone helped accomplish in 2014:
- We formed our first-ever, patient-only Team of Advisors to give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients.
- Three new advisors were named to the Scientific Advisory Board for the Open Research Exchange (ORE), a platform where researchers design, test and share new measures for diseases and health issues. The board was formed in 2013 to lend scientific, academic, industry, and patient expertise to ORE
- The community celebrated the sixth anniversary of PatientsLikeMeInMotion™.
- We worked with Tam, a PatientsLikeMe MS member, to develop the first-ever patient led health measure for chronic pain on the Open Research Exchange. She’s going to start testing the measure in January and it will be available in the ORE library in 2015.
- Data for Good launched in March topromote the value of sharing health information to advance research and underscore the power of donating health data to improve one’s own condition.
- We followed that up with 24 Days of Giving in November, a month-long campaign to encourage patients to rethink how they donate health data. Garth Callaghan, a PatientsLikeMe member, kidney cancer fighter and author of Napkin Notes, shared his inspiration along the way.
We’re partnering up with even more people who believe in patient-centered healthcare. Here are some of the new friends we met in 2014 and are excited to be working with:
- One Mind to help the millions of people worldwide who are experiencing post-traumatic stress (PTS) or traumatic brain injury (TBI), or both.
- Actelion to create a new patient-reported outcomes tool for the rare form of non-Hodgkin’s lymphoma called MF-CTCL.
- Cancer Treatment Centers of America (CTCA) at Eastern Regional Medical Center (Eastern) to help ease patients’ transitions from cancer treatment to survivorship.
- LUNGevity Foundation, to help people diagnosed with lung cancer. LUNGevity will become the first nonprofit to integrate and display dynamic data from PatientsLikeMe on its own website.
- USF Health to improve health outcomes for multiple myeloma patients. The partnership is PatientsLikeMe’s first with an academic health center.
- Schwartz Center for Compassionate Healthcare to better understand patients’ perceptions of compassionate care and strengthen the relationship between patients and their healthcare providers.
- Sage Bionetworks on a new crowdsourced study to develop voice analysis tools that both researchers and people with Parkinson’s disease (PD) can use to track PD disease progression.
- Genentech (a member of the Roche Group) to explore use of PatientsLikeMe’s Global Network Access, a new service for pharmaceutical companies that delivers a range of data, research and tools to help researchers develop innovative ways of researching patients’ real-world experience with disease and treatment.
Out of the office
We’re always looking for ways to get out into the community and get involved out of the office, whether speaking to the FDA or simply helping out at a volunteer event. Here’s some of where we were in in 2014:
- Arianne Graham (Program Director, Client Services and Strategic Initiatives) reported back from the Pulmonary Fibrosis Foundation’s biennial summit in La Jolla, California.
- The PatientsLikeMe staff, led by our co-founders Ben and Jamie, participated in Pete Frate’s Ices Bucket Challenge for ALS awareness.
- Jamie Heywood delivered the keynote presentation at the Drug Information Association’s (DIA) 50th annual meeting in San Diego and received the President’s Award for Outstanding Achievement in World Health.
- Sally Okun reported back from the FDA’s Patient-Focused Drug Development Public Meeting on idiopathic pulmonary fibrosis (IPF).
- Kara Smith recapped several employees’ participation in the LUNGevity Foundation’s ninth annual Breathe Deep Boston 5K Walk.
In the news
And here are some of the highlights from PatientsLikeMe in the media in 2014:
- Innovators in Health Data Series: No Data About Us Without Us
(Health Data Consortium)
- 10 Lessons From Empowered Patients
- PatientsLikeMe Offers Three Services for Pharma and Researchers
(Applied Clinical Trials)
- Speaking the Patient’s Language
(Hospitals & Health Networks)
- Straight talk with…Jamie Heywood
- Social Media Site Connects Patients Suffering From Similar Illnesses
- A listening cure: PatientsLikeMe gives patients voice in clinical trial design
- How To Find The Cure For Diseases Like Ebola: Insights From The Founder Of PatientsLikeMe
(Life Science Leader Magazine)
- How To Build Real Patient-Centered Pharmaceutical Companies
(Life Science Leader Magazine)
- The healthiest #GivingTuesday donation? A gift of data for PatientsLikeMe
- How Sharing Your Health Data Could Change Medical Research
- How Sharing Your Health Data Can Help Others
(U.S. News & World Report)
- Biogen Straps Fitbits Onto MS Patients’ Wrists
- Fitbit trial could be a boon for MS patients
For more PatientsLikeMe media coverage, visit our Newsroom.
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